Make the Creating Hope Act Permanent

The Creating Hope Act pediatric priority review voucher program has been wildly successful. It is critical that Congress reauthorize the program permanently so that children with serious illnesses can have hope for new therapies, better health and even possibly cures.

The Creating Hope Act establishes an incentive for drugs to be developed expressly for children with rare diseases. The incentive is a priority review voucher that can be earned by a company that develops a rare pediatric disease drug. The vouchers come with rights to faster FDA review of any other drug, including a drug that would not be for any rare pediatric diseases.

Since the passage of the Creating Hope Act pediatric priority review voucher program, the FDA has approved 19 new therapies for children with serious illnesses, two of which are for children with cancer.

Vouchers have traded for as much as $350 million, providing a significant incentive for drug development for seriously ill children. $2 billion in vouchers have been traded.  Just recently, a voucher was issued to Vertex Pharmaceuticals for their development of a breakthrough therapy for cystic fibrosis that will give tremendous benfit to patients 12 years and older.

The Creating Hope Act has helped children like Emma Whitehead, who was treated with the first FDA approved drug for a gene therapy, Novartis’ Kymriah, for B-cell precursor ALL. Kyrmiah earned a voucher.  In addition, Y-mABs Therapeutics is using the pediatric priority review voucher program to develop exciting new therapies for children with neuroblastoma and other pediatric cancers.

Now is the time for the Creating Hope Act to be permanently reauthorized. There is clear evidence of its impact. There are 370 days before the Creating Hope Act expires.  On this fourth reauthorization, we are asking for permanency.  Congress has passed two other voucher programs based on the provisions of the Creating Hope Act  — for tropical diseases and medical countermeasures.  Both of these voucher programs are permanent while the Creating Hope Act is not. Now is the time we make this permanent for our children!

This is the action you can take to get this bill sent to the floor of the House for a vote:

Tweet and/or call members of the Energy and Commerce Committee in order to get this bill sent to the House for a vote.  Use sample below for your request:

Please approve HR. 4439, The Creating Hope Act Authorization in order to provide incentives for drug development for children with rare diseases.

Representative ST District Twitter  (area) Phone
Blunt Rochester, Lisa DE At Large @RepLBR (202) 225-4165
Brooks, Susan W. IN 5th @SusanWBrooks (202) 225-2276
Bucshon, Larry IN 8th @RepLarryBucshon (202) 225-4636
Burgess, Michael C. TX 26th  @MichaelCBurgess (202) 225-7772
Cardenas, Tony CA 29th @RepCardenas (202) 225-6131
Carter, Earl L. “Buddy” GA 1st @RepBuddyCarter (202) 225-5831
Castor, Kathy FL 14th @USRepKCastor (202) 225-3376
Clarke, Yvette D. NY 9th @YvetteClarke (202) 225-6231
Dingell, Debbie MI 12th @RepDebDingell (202) 225-4071
Doyle, Michael F. PA 18th @USRepMikeDoyle (202) 225-2135
Duncan, Jeff SC 3d @RepJeffDuncan (202) 225-5301
Eshoo, Anna G. CA 18th @RepAnnaEshoo (202) 225-8104
Flores, Bill TX 17th @RepBillFlores (202) 225-6105
Gianforte, Greg MT At Large @GregForMontana (202) 225-3211
Griffith, H. Morgan VA 9th
(202) 225-3861
Guthrie, Brett KY 2d @RepGuthrie (202) 225-3501
Johnson, Bill OH 6th @RepBillJohnson (202) 225-5705
Kennedy, Joseph P., III MA 4th @RepJoeKennedy (202) 225-5931
Kinzinger, Adam IL 16th @RebKinzinger (202) 225-3635
Kuster, Ann M. NH 2d @AnnMcLaneKuster (202) 225-5206
Latta, Robert E. OH 5th @BobLatta (202) 225-6405
Loebsack, David IA 2d @DaveLoebsack (202) 225-6576
Long, Billy MO 7th @USRepLong (202) 225-6536
Lujan, Ben Ray NM 3d @RepBenrayLujan (202) 225-6316
Matsui, Doris O. CA 6th @DorisMatsui (202) 225-7163
McEachin, A. Donald VA 4th @RepMcEachin (202) 225-6365
McKinley, David B. WV 1st @RepMcKinley (202) 225-4172
McMorris Rodgers, Cathy WA 5th @CathyMcMorris (202) 225-2006
McNerney, Jerry CA 9th @RepMcNerney (202) 225-1947
O’Halleran, Tom AZ 1st @TomOHalleran (202) 225-3361
Olson, Pete TX 22d @RepPeteOlson (202) 225-4831
Peters, Scott H. CA 52d @RepScottPeters (202) 225-0508
Ruiz, Raul CA 36th @CongressmanRuiz (202) 225-5330
Sarbanes, John P. MD 3d @RepSarbanes (202) 225-4016
Scalise, Steve LA 1st @SteveScalise (202) 225-3015
Schakowsky, Janice D. IL 9th @JanSchakowsky (202) 225-2111
Schrader, Kurt OR 5th @RepSchrader (202) 225-5711
Shimkus, John IL 15th @RepShimkus (202) 225-5271
Soto, Darren FL 9th @RepDarrenSoto (202) 225-9889
Tonko, Paul NY 20th @RepPaulTonko (202) 225-5076
Upton, Fred MI 6th @RepFredUpton (202) 225-3761
Veasey, Marc A. TX 33d @MarcVeasey (202) 225-9897
Walberg, Tim MI 7th @RepWalberg (202) 225-6276
Welch, Peter VT At Large @PeterWelch (202) 225-4115
Pallone, Frank, Jr. NJ 6th @FrankPallone (202) 225-4671
Walden, Greg OR 2d @RepGregWalden (202) 225-6730

The Creating Hope Act Authorization has been endorsed by the following organizations: 3/32 Foundation, Adam’s Angels Ministry, Alex’s Army Childhood Cancer Foundation, Amanda Riley Foundation, Association of Pediatric Hematology Oncology Nurses, Braden’s Hope For Childhood Cancer, Bridge the Gap – SYNGAP Education and Research Foundation, Brooke’s Blossoming Hope for Childhood Cancer, Brown University/Hasbro Children’s Hospital, Caleb’s Crusade for Childhood Cancer, Cancer Care Manitoba, Cancer Free KIDS, Carson Leslie Foundation, CHEMOWARRIOR: the Eli Sidler Foundation, Children’s Hospital of Philadelphia, Chloe’s Journey of Faith Foundation, Christina Renna Foundation Inc., Circle of Care, Conner Cares, Curtana Pharmaceuticals, DADA2 Foundation, Daniel’s House Publications, DBSA, EveryLife Foundation for Rare Diseases, FFAME (Family, Friends and Allies of ME/cfs, Foster Tree Service, Gabriella’s Smile Foundation, Georgetown Lombardi Comprehensive Cancer Center, GIC Group/Global Food Safety Forum, Gold Rush Cure Foundation, Grace Way Foundation, Grandparents in Action, Harvard Medical School/ Massachusetts General Hospital, International Society of Paediatric Oncology (SIOP), Jack’s Angels, Jeffrey’s Voice, Joey’s Wings Foundation, Jonah’s Just Begun, Julia’s Grace Foundation, Kids vs Cancer, Kids Without Cancer, Kier’s Kidz, Lucy’s Love Bus, Mackey Children’s Cancer Foundation, MIB Agents, Michael Mosier Defeat DIPG Foundation, NanoValent Pharmaceuticals, National MPS Society, National Organization for Rare Disorders® (NORD), NF2 BioSolutions, Noah’s Bandage Project, Noah’s Hope, Oral Health Nursing Education and Practice, Pediatric Assessment, Learning & Support, Pediatric Cancer Foundation, Pediatric Valley Medical Center, Perlmutter Cancer Center at NYU Langone Health, Rally Foundation for Childhood Cancer Research, Rett’s Roost, Sadie Keller Foundation, Samuel Jeffers Childhood Cancer Foundation Section 32, St. Jude Children’s Research Hospital, Stephen T Marchello Scholarship Foundation, Super Sam Foundation, Swifty Foundation, Syndax Pharmaceuticals, Team G Childhood Cancer Foundation, Teen Cancer America, The Cooper Max Foundation, The Cure Starts Now North Texas, The Dandy Horse, Inc., The Jesse Heikkila Foundation, The Maeve McNicholas Memorial Foundation, The National Children’s Cancer Society, The Nicholas Conor Institute, The Progeria Research Foundation, The Rare Childhood Cancer Advocacy Group, The Scott Carter Foundation, The Steven G AYA Cancer Research Fund, The Valerie Fund, This Star Won’t Go Out, Toby Knapp Radio, Wade’s Army, We Believe Foundation, Wylie’s Day Foundation, Y-mAbs Therapeutics Inc., Biotechnology Innovation Organization

George “G.K.” Butterfield Jr.Representative for North Carolina’s 1st congressional district, introduced  HR. 4439 on September 20, 2019

HR. 4439 has 11 cosponsors (6R, 5D)

Bilirakis, Gus [R-FL12] (joined Sep 20, 2019)
Engel, Eliot [D-NY16] (joined Sep 20, 2019)
Hudson, Richard [R-NC8] (joined Sep 20, 2019)
Kelly, Mike [R-PA16] (joined Sep 20, 2019)
Kelly, Robin [D-IL2] (joined Sep 20, 2019)
McCaul, Michael [R-TX10] (joined Sep 20, 2019)
Mullin, Markwayne [R-OK2] (joined Sep 20, 2019)
Rush, Bobby [D-IL1] (joined Sep 20, 2019)
Speier, Jackie [D-CA14] (joined Sep 20, 2019)
Fitzpatrick, Brian [R-PA1] (joined Sep 24, 2019)
DeGette, Diana [D-CO1] (joined Oct 4, 2019)